[Note: A group asked me to write an article especially for Lyme Disease Awareness month, but I have not seen it, so I am putting this out (first or not) on my own blog. It's slightly re-edited from what I sent to the LDA group member who contacted me.]
There is so much I could say to my younger self that may have avoided Lyme et al. altogether or would have given me a real chance to be appropriately treated.
Many people with Lyme and/or co-infections think that they did something wrong initially and at least sometimes chastise themselves that had they pursued Lyme etc. from the beginning, they never would have had their debilitating conditions. Frankly, I am not certain of this. I was treated and at a point that was considered early at the time. The inadequacy is beyond question.
Of course, when that insufficiency happens and Igenex says you are CDC level positive 12 years later, the CDC/IDSA find an excuse to say it's a "false positive." It's funny how those groups can openly admit the inadequacies of present diagnostics yet use those tests, when negative, to say "You don't have it" and still say "You don't have it" when you test positive. I call that convenient and talking out of both sides of one's mouth. It's as if when they don't like the result, the test is wrong, but when they like it, the test has to be right. As Dana Carvey would say "Well, isn't that SPECIAL?!"
The other, related point is that doctors used to always tell patients to take all of a medication, because stopping just when symptoms cease can cause mutations and greater difficulties down the road. Isn't it soooo odd that this concept is never even suggested about Lyme et al. (or just con-veeeee-nient again)?
Given all the above background, here is my letter to myself and I'll choose to send it for receipt the day before I believe I got the tick bite that derailed my life.
Dear Lisa (June 28, 1996),
I am you -- well, a version of you that has been distorted by illness. You will find what I am going to tell you hard to believe. Please keep all of it in mind over the next weeks/months and perhaps years. You may be able to avoid a great deal of heartache and difficulty if you remember this letter and keep your healthy skepticism against anyone proclaiming to know better than you. You HAVE to push back; you do know how.
My insight is better than theirs because I have lived with the consequences of accepting doctors' ineptitude and ignorance (if not outright mendacity) too readily. And of course a PhD is no less of a mark of sentient intelligence than being than an MD, no matter how arrogant he or she may be (which fortunately you derail pretty well by saying "I'm a PhD; I'm not an idiot"). And yes, you did get that PhD in spite of this.
You may well come in contact tomorrow with a deer tick carrying Lyme, Babesia and perhaps a few additional infections. First, WEAR LONG PANTS. I know, it's hot, but you'll be sitting in a backyard where deer pass through. Sitting on the ground in shorts may have been your biggest mistake, since the next morning, Sunday, you had a large welt 2" in diameter, swollen, hot and painful to touch. Within 24-48 hours, the classic bulls-eye view was visible along with the swelling and tenderness. Then, that Wednesday night, before you saw a doctor, you had a fever of 105 degrees. Sometimes I wonder how I survived that evening in the dark, alone, unable to move, let alone call for help.
BTW if you unable to prevent that bite/rash mark, WTF were you thinking to wait till Thursday to see a doctor? Further, WTF were you thinking to not insist that your live-in boyfriend (who supposedly loved you) skip "playing fireman" (volunteer) to take you to the ER? You never saw the tick, but the bite was eloquent and should have forced you to get attention before that Thursday and probably before Wednesday night. Indeed, the only help you ever got from him was owing to the fact that he had something to do with your ability to smoke marijuana at the time, which was almost undoubtedly better treatment for what ails you than what your doctor provided.
The initial treatment, despite the primary care doctor believing it was Lyme, was cursory at best. Two to three weeks of Amoxicillen is nothing short of lame. First, you need to question that. See if you can find an expert in Lyme in 1996, even if you have to drive to see Dr. Richard Horowitz in Hyde Park, NY. Ticks do not carry just Lyme and your PCP never even mentioned this, nor suggested follow up bloodwork to see if your illness was still there at all.
He even had the chance to do so in 2002 when you first had strabismus and problems with your right leg. You should have insisted on re-visiting Lyme and related tick-borne illnesses, perhaps via another doctor. (You should ask the RN you knew as a Healing Touch practitioner around that time for assistance. Stopping her care was also a mistake.)
This will be especially hard, I know. I remember that fear of needles and still have to use a technique to reduce anxiety over blood draws or IVs. But if you are not far more pro-active in seeking advanced and exhaustive medical investigation before you become ABD in 1999, if not by 2002, you face a future as a human pin cushion.
I HAD to cope with that phobia -- there was no alternative. I am at the point of WANTING certain therapies that involve IV needles. Wrap your head around that one. I'll give you a sec.
I'll tell you how I came to this. In various jobs and travels and disappointing medical care, I had to drive 250 miles RT to see a doctor willing to treat me with 4 weeks (all insurance agendas allow) of IV antibiotics. And that took till 2009 to find -- and I STILL wasn't tested for co-infections. So its usefulness just wasn't going to be strong. Even that came after years of other doctors saying I had all sorts of other illnesses (Miller-Fisher, Myasthenia Gravis and MS among them) and one even telling me outright that I didn't have Lyme. I unfortunately believed that conventional wisdom about Lyme. And yet not one doctor shared the records documenting that I didn't have Lyme or similar. You MUST get everything and question everything. They had to have hidden information from you, as I will show below.
I survived a PICC line and even another IV the same day. Why? The disbelieving (or ignorant or lying) PCP who wouldn't even recommend an expert to evaluate my positive Lyme test compelled me to make these long drives. Because of a slight complication with the PICC installation, I had to do the drive two days in a row. I was in the midst of a Supraventrical Tachycardia (SVT) event -- one like you have never experienced. It may have lasted for two weeks and I lost 13 lbs. My BP likely dropped and caused me to temporarily go blind -- while driving there on day two -- on an interstate highway. The spike in adrenaline may have restored it, but I was in the ER with a 180 heart rate before the day was out. My ER doc wore cowboy boots. I know that will amuse you.
I always assumed a common Lyme test, the ELISA, was negative for me for years (it's thought of by at least some as a test that misses Lyme frequently) and a negative ELISA prompted doctors to shut down considering it. The outdated, misguided (except by $$$) CDC/IDSA rules require a positive ELISA before doing another test, commonly called the Western Blot. Yet when I found one doctor who did turn over ELISA results of tests I had between 2010-14, I found them almost all positive, and at least once strongly so. What gives? Is that why the others withheld test results from me? (Other people have said doctors have done this.)
My heart remains undamaged; it's my central nervous system that has become an awful mess. Only you can reverse this decline. I cannot walk properly or for any length of time. I don't work and, after a long fight, I receive SSDI. I know you wouldn't want this. I'm not even that warped to like it. I STILL cannot stand the loss of independence or hovering over me. Yet I also have a foot-drop that causes me to trip myself.
Moreover, I only have known that I have Babesia since 2012 and subsequently have had other tests suggesting that I may have Epstein-Barr, Ehrlichia and/or Bartonella. Currently, I exist on a severe diet that you would marvel at (no sugar, no gluten, no soy, no dairy, no rice, no corn, no potatoes, almost no nightshades). I believe I recently had a severe autoimmunity crisis as well as a Candida crisis and need to address these before I can fully combat these diseases.
Knowing what I know now, I say RUN from that "boyfriend" (before he stabs you in the back) and I say avoid exposed skin outdoors and do tick checks often. That evening you spent alone in the dark with a 105 temp unable to do anything to help yourself should prove this to you. The rest of this should seem self explanatory on the latter points.
Additionally, YOU have to be THE advocate for yourself. Even though one would think paying a doctor means they are there to serve you, they must serve other masters and information they receive is often only what drug or insurance companies want them to know. (That is, paid "science" is not always science but cherry picked spin.) Therefore, many typical doctors cannot enable themselves to be committed advocates for you, even if they wanted to do so.
The only good thing about this illness is that things you would otherwise greatly lament -- say the job you didn't get, the friendship/relationship that went awry and such -- just do not matter anymore. This disease is like a living death. I have often told people I either want to be invisible or I am invisible. I am not sure how much is "what is" or "what I accept" or the "leave me alone" view of seeing most things people value as highly overrated. I do not want much anymore. If I cannot be the person you know well -- and that person is now practically a stranger to me -- there really is no point.
It's like I'm just playing out the schedule, eliminated from any significant post-season play. There's not even a "spoiler" role, as if I would relish that, anyway.
You may be able to change my present. Yet you will have to push hard and well before I bought my first cane (December 2004), to avoid this nightmare. What future you have must be seized by you -- you have to find those who will listen and somehow pay for expert care ASAP.
Good luck. You (and I) need you.
Lisa (2015)